Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Treatment

Question:

What kinds of treatment, including medication, have you tried for your RSD? Submit Your Comment

Comment from: meadow13, 45-54 Female (Patient) Published: September 27

I've got hurt on the job in 1991, lifting a bag of trash. I've been dealing with all kinds of treatment, shots, medications, etc. I was told I'm in the third stage of RSD (reflex sympathetic dystrophy), and I have headaches, face drooping, lots of pain, swelling, etc. I've been to so many doctors. I have spinal cord machine and wires, and medicines. It's a fight each day. But you have to keep going and do what you can to get through.

Comment from: Tripadoodle, 55-64 Female (Patient) Published: July 12

I acquired RSD (reflex sympathetic dystrophy) in 2003, after I broke a bone in my left foot and the cast was too tight. It subsequently spread to my right foot after I wore a tight bandage on it. I know now not to wear anything tight on any part of my body. The first stage was very bad and I mainly used the left foot as a very painful, stiff, swollen, red prop, as it wouldn't bend. I was given amitriptyline which calmed the nerves and killed the excruciating pain but it returned periodically, though not so bad. I was very fortunate to see an osteopath who manipulated the foot and ankle and I am now able to walk normally. My feet don't like changes in temperature or wearing heels higher than one inch. I sit with my feet up just about all the time and, when I have to have them down, I use a footrest to keep my toes in the air. I feel so sad for those who are left with the first stage problems as they are indescribable. I thought my life was over but I get by quite well now and know what I can and cannot do. I have been prescribed gabapentin to use if the RSD flares up.

Comment from: peterbilt01, 65-74 Male (Patient) Published: March 08

I am truck driver, 71 year old. I crushed leg and foot in 1984. I had pain pump infusions shots as you all have and it did not work. RSD (reflex sympathetic dystrophy) is bad stuff. Finally the doctor gave me prescription for Dolobid, its generic is diflunisal and it has really helped. I hope it will help someone. Good luck.

Comment from: Sherry, 65-74 Female (Patient) Published: September 15

I have had RSD (reflex sympathetic dystrophy) for four years, the result of multiple surgeries. The pain was indescribable so I went to a pain clinic. I've had a neurostimulator implanted and it's helped immensely. I realize that physically things will never be the same, however my quality of life with this stimulator has been so much better.

Comment from: steve c, 65-74 (Patient) Published: July 08

I got RSD/CRPS (reflex sympathetic dystrophy/complex regional pain syndrome) in my right foot and toes following ankle surgery. I was not diagnosed for 4 months. I have been to several doctors who knew little about this problem. For treatment I tried 6 nerve blocks with no help. I tried physical therapy, maybe helped a little. Finally I found a doctor who has treated me 12 days in a row with Calmare therapy and I am doing well so far. It is a non-invasive electric stimulus treatment that is helping me and others.

Comment from: Lanie, 45-54 Female (Patient) Published: January 19

I fell down stairs November 2, 2011. I've been in constant pain 9 surgeries later. I am told I'll never walk again. I've been in a wheel chair, thought myself to walk, and ended up ripping both Achilles' tendons. I have a spinal cord stimulator. I still need medications for my reflex sympathetic dystrophy. I asked the doctor to remove my foot! Living with this is almost suicidal! Seriously. And there's no end in sight.

Comment from: joyce, 45-54 Female (Patient) Published: December 12

I fell 7 years ago and had little pain but while walking my dog one night, he pulled my arm and that night my arm had pain I'd never experienced and I went to the hospital the next day. The doctor said it was reflex sympathetic dystrophy (RSD). Now I go to a pain clinic, and I have my blocks done in my neck, for both of my arms, once every 6 months, but now my doctor says that it is dangerous so we have to explore my options, whatever they might be. I'll get back to you in a week. But I'm always in pain no matter the pills the neck injections or therapy, sorry I don't feel much hope!

Comment from: Terri, 45-54 Female (Patient) Published: February 14

I broke my ankle and luckily was diagnosed with RSD approximately 1 month later. We treated it aggressively; 3 lumbar sympathetic nerve blocks, intensive physical therapy, and hydrocodone for the pain. Initially all I could do was wiggle my big toe. Another big help was swimming. I started out just simply learning how to walk again in waist deep water. Then I would swim 1 lap, then 2 more, and so on each day. I"m convinced this was a huge help. I started to walk without crutches after 6 months and was in physical therapy for almost 1 year. It took about 2 years to get back to normal. Still the affected leg is a bit weaker 5 years later, but I"m in total remission. Key is early diagnosis and a take no prisoners attitude. Trust your gut, the 1st orthopedist kept insisting it was just a badly broken leg. I knew it was something else - the pain was almost unbearable. I sought 2nd opinion within 1 month and he nailed the diagnosis in 5 minutes. Be persistent and keep on swimming.

Symptoms of Rheumatoid Arthritis
Comment from: Jackie dear, 45-54 Female (Patient) Published: December 10

I am living with RSD (reflex sympathetic dystrophy). I am disabled and cannot sleep, and am very depressed. So I joined a center which helps with my pain and mental state. I have found it hurts to exercise but I hurt more the days I don't.

Comment from: eye, 45-54 Female (Patient) Published: July 30

I am 48. I have had reflex sympathetic dystrophy (RSD) for 22 years. I have a great doctor. I take my medicines and nerve blocks to help as well as a spinal cord implant. They all are very helpful. Everyday it's a different pain. Some days are fine, while others are rough to deal with. Always talk to your doctors and tell them how you feel. Never give up hope.

Comment from: 55-64 Female (Patient) Published: June 17

With RSD I experience painful stabbing, burning, almost like an electrical shock on the left side of my tongue, and numbness on left side of lip. When pain is extreme, it is hard to eat or swallow. I have been to two neurologists and an ENT. They have tried Cymbalta, and an anti-seizure drug, no help. Both drugs had side effects and did not stop the pain. It started after going to the dentist.

Comment from: Debbie R., 35-44 Female (Patient) Published: March 13

I've found that swimming works wonders. I tried the spinal block but it didn't work, I have severe nerve damage to my right foot/ankle. My doctor was trying to straighten out my leg after a total knee replacement/fall out of hospital bed. I had nerve conduction test that showed my nerves are nonexistent and also got atrophy from having leg in cast for 6 months. My skin is shiny, no hair growth, and I have constant burning, swelling and sweating.

Comment from: jus, 25-34 Female (Patient) Published: December 16

I have been diagnosed with RSD and so far no treatments have worked and I'm in constant pain. I have tried amitriptyline, Vicodin, Percocet, nerve block injections, tramadol, Lyrica, and steroids but none help.

Comment from: fiona, 45-54 Female (Patient) Published: November 21

After radical mastectomy 2010 for breast cancer I have suffered from nerve damage/chemotherapy damage and the worst- constant pain from radiation damage to my lungs and heart! Now I have been diagnosed with RSD. After giving up codeines twice I'm having to manage my pain without pain-relief (left hand knuckles very sore and swollen).

Comment from: lozzieb, 25-34 Female (Patient) Published: October 22

I had RSD whilst in high school, I had it for nearly 3 years and I was living in a hospital. I had it in my foot which meant I couldn't walk, the pain was so severe. As hydrotherapy and physiotherapy didn't work they opted for giving me an epidural numbing me from the waist downwards. I was like this for 3 weeks, I got told I would never walk again. This was awful news, being only 15 my life was torn apart. I am now 23 but I promised myself I'd not let it beat me; it took me 3 years but I walked out that hospital. The only downfall is that it is never gone, it can return at any time.

Comment from: TinyCookie, 55-64 Female (Patient) Published: October 15

The month before I turned 55, I fell doing housework and broke my arm and wrist in 3 places. I went through surgery to have a pin, plate and 8 screws to put my arm and wrist back in place. I was going to rehabilitation and working out at home also, but the pain was too great and I still could not bend my wrist. After 3 months, the surgeon recognized the symptoms as RSD and referred me to a pain specialist. Next week I am scheduled for a nerve block injection.

Comment from: mari, 55-64 Female (Patient) Published: July 29

A month ago I fell and did serious damage to my hand and wrist. two days later I had surgery to reconnect my hand to my wrist. the surgeon also did a carpel tunnel release procedure while he was in there. While some of my recovery is going well, the pain in my hand and especially my thumb, index and middle fingers has been continuous and often unbearable. They get so cold and stiff, the feel like they are going to explode. There are other symptoms, but these are the worst. Fortunately, the surgeon recognized the symptoms as CRP and referred me to a pain specialist. Next week I am scheduled for a nerve block injection. I am nervous about the procedure, but it seems to be the way to go. I hope it works, or at least helps, because I can't imagine my future quality of life if it does not, especially since I have other health issues I deal with daily. I am hopeful though, since my own research shows that not all doctors are as fast to diagnose CRP, and I sympathize with those who have suffered with this painful condition for a long time.

Symptoms of Rheumatoid Arthritis
Comment from: Sue, 45-54 Female (Patient) Published: May 24

I was diagnosed with RSDS in 2003, two years after a crush injury to my foot, and three subsequent surgeries. Once diagnosed, I was referred to a pain clinic. The folks there know exactly what RSDS is, and have a treatment plan for it. Originally, I was treated with pain medications, but began a series of nerve blocks into the sympathetic nerve (injections occurred at the site of a nerve "bundle" in my lower back). Then, the last two blocks I had done were performed using "radio frequency" to oblate those nerves. The first block lasted for nine months, and the second one was in 2005. I haven't had one since, and do not take any daily medications other than vitamins. I have been able to wear a variety of shoes, run on my treadmill, and do most anything. I recently had a fourth surgery and am concerned that my RSDS will need to be managed again, but I feel good about my options for care.

Comment from: Sharon, 55-64 Female (Patient) Published: April 15

I have had RSD since a shoulder replacement surgery back in 2006, which had to be redone five months later. I was diagnosed in 2012 with RSD. I underwent the Ketamine infusions, which helped to a small degree, but in 2013 heard of a drug called low-dose naltrexone (LDN) and started it. I have been amazed at the help it has given me. I would strongly suggest to anyone that has this disease to research, talk with your doctor, and give this drug a try. It's given me my life back.

Symptoms of Rheumatoid Arthritis
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